Ah what a nightmare! Poor little Molly has really been through the mill.
After she recovered from the bug (she went down from 19kg to 16kg, thats about 6lb lighter! She was skin and bone, it was AWFUL), we hadn't been back from the weekend away long and her liver tests showed abnormal - first time since she recovered from the transplant. SO scary.
So off we trundled (!) to London, all thinking it was a touch of rejection. Not so. Now I am not sure, but I think I am kind of pleased it wasn't rejection, even though I know that happens sometimes. However, its not that at all. Its a kind of plumbing thing....
Molly seems to have scar tissue which has narrowed her bile ducts, due to the surgery. Quite a common complication apparently. She had to have a biopsy (argh, hate that, its brutal) then an MRCP which is a scan like the MRI - big tunnel, lots of noise.... she was very sedated and slept through the lot! I had earphones and it was still deafening. Amazing.
Anyway, this showed the narrowing. So we are due back at Kings College, London on the 18th June for a PCT. This is done under general anaesthetic and, if I am correct in my understanding!, is a camera in the bile pockets, looking at the ducts. If its not too narrow they should be able to fix it there and then with a wire thingy. (technical, me) If not they wil have to do an operation, but not sure when that would be.
The thing is, this has caused the bile to back up into the liver and she has been suffering from acute cholangitis (infection). I suppose acute is better than chronic.
Her liver numbers are normal now, but any temperature means we are straight into the local (which is an hour away from us). Thats happened twice in the last two weeks.
She is at school today, so fingers crossed she will stay well until we have to go, but I am thinking we will be back in at least once or twice.
We would have been in London or Plymouth longer after the biopsy, but I did the I.Vs at home. That WAS scary and I am not sure I want to repeat that. I suppose I would, as it meant she was home playing, but I HATED being the one causing her pain. On a selfish note, I really would refuse to do it, but Molly was SO happy to be home that I suppose I would do it again, for her. It makes me cry to think about it which is not like me at all but then again, its been pretty stressful.
The other stressful thing is that I am STILL fighting for her DLA - we are going to appeal now. I think it will make me feel better, actually TALKING to someone and trying to make them understand how it affects us (and therefore Molly) financially. I just want to be able to stay home and take care of her when she is poorly, not leave her with someone else. I want to be home when the phone me, not trying to get away from work. She needs extra care and I just can't seem to make them understand this. So very very frustrating and upsetting to be fighting about money when all I want to think about it her health and happiness.
So think of us, send us good wishes. And hopefully we will make our holiday to France, but who knows? We have lost loads of work, being self employed doesn't help. And it costs a fortune to feed ourselves in hospital, let alone travel costs for Shaun and Daisy.
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